Eliminating artificial ingredients' impact on tics

[Claire]

Most the regulars here are pretty committed to removing artificial ingredients, and Jeff has been our most vocal spokesperson on getting so many of us on board (thanks Jeff!).

 

This first post summarized what people have posted on this--I will try to keep it updated.

 

1. Do you try to eliminate artificial ingredients?

2. Have you noticed any correlation with tics or behavior (if especially with certain ones, please note it.

 

 

FYI, there are two main non-profit groups with info on this. www.feingold.org, (from Jeff) and Failsafe (from Ausclare).

 

STATS SO FAR:

7 of 7 try to eliminate. 7 of 8 definitely noticed a correlation with tics. It seems with this one, reintroduction after elimination for an initial period can be very telling.

 

1. Chemar-- Yes. Yes-He reacts big time to artificial sweeteners, colors, flavors, high fructose corn syrup, preservatives and MSG and so we totally avoid these.

 

2. Heather-- Yes. Yes--My son is sensitive to Dyes and Colours, HVP (Hydrolyzed Vegetable Protein, which contains MSG. Elimination dramatically helped in reducing tics

 

3. Phyl --Yes. Yes--We did notice a direct effect whenever he had artificial food coloring - these caused facial tics and hyperactivity. (He couldn't stop running from room to room). Also msg affects him greatly - he has trouble breathing and gets very anxious. So we avoid those things.

 

4. Susanna --Yes. Yes--His tics were under control after elimination of the artificial colors, flavors, preservatives and high fructose corn syrup

 

5. efgh --Yes. Yes--immediate reaction with regard to his tics/behaviour/asthma ... example Flavoured pringles, Fanta, etc immdly sets off the tics in him. So, I stick only to natural stuff most of the time.

 

6. Jeff -- Yes (both daughters) Yes--The artificial colors and flavors definitely cause us to tic. We noticed improvement within a couple of weeks of eliminating, and we've followed the Feingold program for 4-5 years now. Tics are no longer an issue. When we eat too much of a bad thing, we see the tics coming back.

 

7. Ausclare. Yes. Yes. Also eliminates salicylates and amines, per Failsafe.

 

8. Vickia-yes, my son's tics are worse with nitrates and corn syrup (and we're still eliminating others)

 

9. Julia. Yes-yes. Tics are immediately worse after consuming artificial colors, artificial flavors, any preservatives, MSG (in any form), caffeine & some of the highest salicylate foods. "Natural" foods from the health food store are NOT usually safe. (I just cook from scratch.)

 

10. Cum Passas Yes, My husband has never stopped eating the bad foods because in the 60s & 70s no one knew he had anything but bad habits. To this day he eats what ever he wants drinks soda all day long (pepsi) He worked as a restaurant manager for years and ate what ever was on the menu every day. Same with his father drinks coffee a lot..Thought I would share since my son hopes to eat a candy bar again some day.

 

 

Others, please add when you have a chance...

[Chemar]

I would also add that we have found that my son's tics, OCD and overall health are also sensitive to refined foods vs whole foods

so

we avoid white sugar, white flour etc and rather use turbinado sugar and rye or other whole grain flour products.

[Guest Guest_efgh]

Claire

 

First of all I would like to applaud you for your EXCELLENT initiative.

 

My answers

 

1) yes

2) immediate reaction with regard to his tics/behaviour/asthma ... example Flavoured pringles, Fanta, etc immdly sets off the tics in him. So, I stick on to natural stuff most of the time.

 

Claire, keep up the good work!

[Guest Jeff]

Do we eliminate? Yes.

Have we noticed a correlation? Yes. The art colors and flavors definitely cause us to tic. We noticed improvement within a couple of weeks of eliminating, and we've followed the Feingold program for 4-5 years now. Tics are no longer an issue. When we eat too much of a bad thing, we see the tics coming back.

 

Jeff

[Claire]

Just got this email from Feingold.

 

For those of you who don't know her, Shula Edelkind sends out all the Feingold email newsletters, and I am sure much more.

 

THIS STORY IS REMARKABLE--I never knew her son was dx'd with Tourettes, and now he has no tics!! Please note that I had updated my week to fewer tics intro and pulled out the artificial ingredients as its own section.

 

Shula Edelkind / The Feingold Program

"Mother of a child with AD(H)D

When Shula Edelkind's second child was more than "all boy" and became an obvious behavior problem, she didn't have a clue what to do. She obeyed the doctors, took parenting courses, put him on Ritalin, then Cylert, and was considering adding Tegretol as an effort to control the hallucinations

produced by Cylert, when he developed Tourette Syndrome. In the 1980's,

doctors had not yet seen Tourette Syndrome. It took the Tourette Syndrome Association's article in a magazine, and a four-hour trip to a special

diagnostic clinic to get the diagnosis. When she saw the Woman to Woman talk show on TV discussing treatments for AD(H)D, including the dietary treatment of the Feingold Association, she thought it might be useful, or at least not harmful. Remarkably, in four days, her son was behaviorally normal. By the end of the year, there were no more Tourette's tics and he has been in "permanent remission" for the past 20 years."

 

 

--Claire

[Chemar]

That is very interesting Claire. although I couldnt help but notice the following

 

 

.......when he developed Tourette Syndrome.  In the 1980's,

doctors had not yet seen Tourette Syndrome............. 

 

 

I find that puzzling....does she mean her doctors hadnt seen TS??

 

although it has only been in the last twenty years that advances in understanding and diagnosing TS have occurred, and as we know many doctors are still very ignorant about it, it has nevertheless been documented since Dr Itard first reported on it in 1825, followed by Dr Gilles de la Tourette's detailed documentation on it in 50 individuals in 1885.

 

Also, do they happen to comment on whether this was hereditary TS or how they believe the son "developed" it?

 

I would be very interested in getting some more details on this as documented cases of actual TS going into full and absolute remission like that are VERY rare.

 

It would be fascinating if someone could maybe invite this lady to visit here and give us some more details, as this would really be helpful information to many with TS

[Claire]

Hi Chemar,

 

No more details--I did forward the email to Sheila Rogers though.

 

I just sent Shula an email with this link, to ask if the removal of Ritalin was also related.

 

Claire

[Heather]

I am very curious about the Tourette's diagnosis since I don't believe that there is an accurate diagnostic tool to determine whether a child actually has Tourettes since there are so many more cases of tics in our society than in the past. As I mentioned on another post, if we had continued with the medical doctor's appointments and evaluations, Will would have a diagnosis of Tourettes at this point. My understanding is that both vocal and motor tics must be present for more than one year. Does there also have to be a herdity link to have a diagnosis? Our medical doctor said not.

 

With such a dramatic increase of tics in our society in the past 10 years and the new identification of the PANDAS disorder, I wonder if the Tourettes diagnosis needs to be reevaluated.

 

Heather

[Heather]

hereditary link is what I meant to type above

[Claire]

Heather,

 

Exactly. People are getting dx'd with TS based on a neurologist look at current symptoms and the length of time they had them. Even if there is no family history, they can get this dx....and many get this dx in error, then resign themselves to not trying to reduce symptoms.

 

Stories like this show how severe tics (regardless of dx) can improve substantially.

 

I hope Shula responds...

 

Claire

[Heather]

Chemar,

 

Just out of curiosity, have you ever tried the Feingold Diet with your son to remove salicylates or the preservatives BHT, BHA and TBHQ? It seems that Jeff and his family have a classic case of Tourettes since both he and his daughters have it so there is the genetic link. Jeff, has your family had a diagnosis of Tourettes?? If so, and if Shula's son did have a Tourette's diagnosis then maybe there is some correlation with having the gene for Tourettes and the inability to digest salicylates. Since Jeff's family is in remission as long as they follow the diet, then that would match what Shula reported as well.

 

Heather

[Phyl]

Heather, that's a great question...

 

I also wanted to say that my son received an "official" diagnosis of ts, because we told a neurologist that he had had both vocal and motor tics for over a year. There is no hereditary link in our family for tics, but there is for ocd. Yet since his yeast and clostridia levels have come down and other parasites that he had were eliminated, these tics have largely disappeared.

 

Anyway, since ocd and adhd are so closely related to ts, I wonder if a genetic link would be required for ts, whether it would also encompass those conditions too.

[Heather]

Phyl,

 

That is interesting that you had the diagnosis of Tourettes without the genetic link. I also believe there is a genetic link for those other conditions (ADHD and OCD). My nephew showed signs of OCD when younger but didn't have tics. He had been on antibiotics a lot as a toddler with ear infections so I believe they showed up in him because of an imbalance, then in the teen years the hormones did their thing and his OCD went away. It makes me believe that there is a genetic link to all of these comorbid conditions and it depends on what environmental damage they are exposed to whether the conditions are displayed or not and in what form.

 

Heather

[Gina]

Hello All,

 

I have a few questions regarding heriditary TS...

 

Isn't OCD, ADD, ADHD, all possible symptoms that go along with TS? So can you have the TS gene and only show an OCD/ADD/ADHD behavior w/o tics? Or do you have to have tics with the added behavior issues? Can you be a carrier of the TS gene and not show any signs at all but pass it on to your children?

 

My husband has TS which has passed onto my son. When I look at my husbands parents I would bet that he got his TS from his Dad. There are no noticable tics but he is what I would call OCD and an alcoholic and I would say he has an explosive temper and likes things his way but, that could be due to the alcohol. My father in-law has 3 brothers and 2 sisters that are all quite mellow and easy going. Although the whole family can party pretty heavy with thier alcohol. I notice minor things in the rest of his family. My husband is the only one that has it severe enough to be diagnosed (he has 2 brothers and a ton of cousins mostly boys with no major symptoms)

 

I do notice that if it is infact that it comes from my father in law that the TS seems to worsen with each generation. (ex. my father in law has very little signs of ts and my husbands was more apparent and my sons very apparent.....) Is this noticed by others that can pinpoint the hereditary factor of TS in thier families?

 

What do you all think? Would love to hear other peoples ideas on this.

 

Thanks for listening,

Gina

[Claire]

Gina,

 

I know when I read about PANDAS, they discussed that high risk children were those with tics OR OCD in the family--e.g. the two are related, not just when comorbid.

 

It could be it is worsening with each generation in your family because of 1) more awareness (since tics tend to reduce in adulthood, the grandfather may have had them as a child) or 2) some environmental 'insult' as it is called, eg. mercury caused a worsening of symptoms.

 

This latter part is just speculation.

 

Claire